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I’m not a particularly superstitious person.

I’m not afraid of black cats or broken mirrors and if I don’t walk under ladders, well, that’s just common sense really.

However, I am deeply superstitious about Miss Z. Call it superstition, Murphy’s law, bad luck or whatever you want, but whenever I say something positive about Miss Z the worst invariably happens.

Take for example, my husband planning a trip to visit family in the UK, leaving me on my own with Miss Z and her sister for ten days.

I encouraged him to do it, saying “it will be fine, so long as Miss Z doesn’t end up in hospital!”

Can you guess what happened next?

My dear husband departed for the UK on a Thursday and by Saturday we were sitting in the hospital emergency room, waiting to be admitted.

...Sigh.

Some time ago, we had an appointment with Miss Z’s paediatrician.

We talked about her problems managing secretions and her tendency to vomit several times a day. We ended the appointment by reflecting on how wonderful it was that despite these problems she had never once had a chest infection.

Can you guess what happened next?

A year of constant chest infections.

In fact Miss Z tried out the whole A to Z range of chest infections which eventually caused permanent damage to her lungs.

...Sigh.

I used to brag about what a great eater Miss Z was. She might not have been willing to try crunchy food, but she would eat just about anything in pureed form.

One of her favourites was fresh mango, so my husband bought a crate of mangoes at the end of the season and I spent a whole weekend peeling, blending and freezing them.

Can you guess what happened next?

A regression with her swallow that led her to stop eating and drinking is what happened.

She now receives all her feeds via PEG.

I had to figure out what to do with huge quantities of frozen mango puree. (I suppose I should be greatful it wasn’t the chicken liver puree that she also loved, which would have been much harder to convince others to eat!)

So, you can understand why I am reticent to mention whenever anything good happens in Miss Z’s life. I don’t want to jinx it.

Nowhere is this more difficult than when I’m talking to her neurologist. It is easy when she’s having increased seizures – I can talk about that with no problem.

Unfortunately, the superstition doesn’t work in the reverse, so if I complain about the increase in seizures, they don’t suddenly stop.

Ironically, they do sometimes stop when I mention they’ve increased – but only if we’re trying to monitor them.

Miss Z has had numerous EEGs because of her frequent seizures, only to go the entire duration of the EEG without any seizure activity what so ever.

Once we even had a 24-hour EEG where she had cluster seizures in the car on the way to the hospital, not a single sign of a seizure for 24 hours while she was in the hospital, and then she resumed cluster seizures in the parking lot as we left the hospital.

...Sigh.

So, whenever I talk to anyone about her seizures and they aren’t bad or becoming worse, I find it really difficult to say the words… Even now I hate to type them.

It is almost impossible for me to say because I’m so superstitious.

“Her seizures have improved”. “The new medication seems to be working”. “She hasn’t had a seizure in over a week now”.

And then I search frantically for something wood to knock on.

I guess we all have our superstitions, and Miss Z’s seizures are most definitely mine.